NAF Archives

Ataxia Patient Advocacy Organizations Applaud the US Senate for Passing the Bipartisan “National Ataxia Awareness Day of 2020” Resolution

November 20, 2020

The National Ataxia Foundation (NAF) and the Friedreich’s Ataxia Research Alliance (FARA) applaud the United States Senate on behalf of Ataxia patients and their families for passing the National Ataxia Awareness Resolution of 2020 (S.Res. 717). Led by U.S Senator Elizabeth Warren (D-MA) and U.S. Senator Cindy Hyde-Smith (R-MS), this Read More…

Inaugural International Congress for Ataxia Research (ICAR) to Take Place in March 2022

November 18, 2020

The National Ataxia Foundation (NAF), the Friedreich’s Ataxia Research Alliance (FARA), and Ataxia UK are pleased to announce the date for the inaugural International Congress for Ataxia Research (ICAR) to be held at the Caribe Royale resort in Orlando, Florida, USA on March 15th – 18th, 2022. The Congress will Read More…

National Ataxia Foundation Announces Launch of NAF Drug Development Collaborative

November 5, 2020

Pre-competitive pharma industry consortium looks to accelerate development of treatments for Ataxia The National Ataxia Foundation (NAF) announced today the launch of the NAF Drug Development Collaborative. This pre-competitive pharmaceutical industry consortium has a principal goal of accelerating the development of treatments for Ataxia. The group will address the many Read More…

Why I Founded the Philadelphia Ataxia Support Group

October 19, 2020

Guest Author: Jay Armstrong, NAF Support Group Leader At my 7 year olds son’s first baseball practice the coach asked if a parent would be willing to help with a pop-up drill. It was mid-day. Hot. And most of the parents were tucked deep in the shade. The coach, a Read More…

About Brain Donation – Have You Ever Wondered?

October 14, 2020

Author: Mary Ann Peterson, NAF Research Associate Many feel powerless when they are first diagnosed with Ataxia. Brain donation gives the donor and family the power to provide researchers knowledge to fight back against the disease. The examination of diseased brain tissue by a trained researcher remains the gold standard Read More…

2020 Walk N Roll Goes Virtual

August 13, 2020

Author: Joel Sutherland, Development Director Mark your calendar for Saturday, October 3rd beginning at 1:00pm EDT for the 2020 National Ataxia Foundation Virtual Walk N’ Roll. Register to join us AND win prizes. This Virtual Walk n’ Roll will feature appearances from many people across our Ataxia community. You will hear from Read More…

2020 Ataxia Hill Day

July 30, 2020

NAF and FARA held our second Hill Day on Thursday, September 10, 2020! The event raised awareness about Ataxia and supported legislation that directly impacts our communities. Ataxia Hill Day 2020 Was a Success Thank you to all who helped us Flood the Hill for #AtaxiaHillDay. Twenty Senate meetings were held Read More…

2021 AAC Is Going Virtual

July 21, 2020

Author: Lori Shogren, Community Program and Services Director A Note About the 2021 Annual Ataxia Conference We know how valuable it is for those living with Ataxia and their caregivers to come together in person at our annual conference to gain strength from shared experiences. The current COVID-19 pandemic necessitates Read More…

EL-PFDD Meeting

June 30, 2020

The Voice of the Patient Report (PDF) for Polyglutamine Ataxias and DRPLA is now available. This report summarizes information from the Externally-Led Patient Focused Drug Development (EL-PFDD) meeting we hosted on September 25, 2020. We would like to offer our thanks to the patient panelists, phone callers, and individuals who submitted Read More…

NAF Statement on Racism and Social Injustice

June 25, 2020

We have been shaken, saddened, and angered by the death of George Floyd here in NAF’s hometown of Minneapolis. We have also been strengthened by the peaceful anti-racism protests that have swept the country, and the necessary conversation that is occurring. The National Ataxia Foundation condemns all forms of racism and social Read More…

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